Monday, March 19, 2007

I have come to the conclusion that my expectations of my friends is too high. I always felt that my friends would do as I would in the same situation, I have realized that I was wrong. If the tables were turned, I know I would be there for any of my friends. My mom told me life would be different as a widow, people treat you differently. I never imagined that would include my good friends. Maybe I should start at the beginning so you get a better understanding of where I'm coming from.

Since Peter died my friends have disappeared on me, there is no other way to describe it. I hardly ever hear from any of them, phone, e-mail, nothing! It's as if I don't exist, because if I did, then they would have this dark cloud hanging over them. I know everyone deals with death in their own way, but can't they see that I'm dealing with a much greater loss than they are? If they break all ties with me then it's as if it never happened, where I can never get away from it. Believe me, there are definitely days when I wish it never did happen. Over the months I have shrugged it off and just chalked it up to everyone being busy with their lives. On Saturday, as you all know, I had a birthday party that was also a St. Patrick's Day dinner for Robbie. The invitations specifically read RSVP regrets only by 3/14, as of that day I had one regret, my mom.(She is doing very well and is hoping to get out of the hospital sometime this week. She will either go to a pulmonary rehab, or come to stay with me so I can take care of her until she is able to breathe easier.) I was expecting anywhere from 25-30 people, so I bought 8 corned beefs, 6 heads of cabbage, 5 lbs. of carrots, and 10 lbs. of potatoes. I had 10 people show up, with 2 phone calls of regret. I cooked all day, I made 3 Irish Soda Breads, I had the refrigerator stocked with drinks, and I had a big cake. I don't know what people were thinking, and I can't say what I was thinking! Thank goodness it didn't phase Robbie in the least, he still had a good birthday thanks to the family and my one friend who did show up. If Peter were here he would have said, "It's their loss, they missed out on a fantastic meal." He wouldn't let it bother him, so I'm trying to be more like him in this instance.

We had our first family picture taken this evening without Peter, that was hard on me. Every year we would have a new photo taken with the newest member of the family, Christmas 2005 was our last photo. I think it turned out nicely, it is for the church directory but I will get a free 8x10. Helen got her haircut for the occasion, she certainly looks more mature, it is a very cute style on her. I was very proud of her, she stood where the photographer told her to, and she didn't move. The doctor called me on Thursday, her thyroid levels are a bit high, they think it could be due to the fact that they just increased her dose. She has to go back in 4 weeks so they can recheck it. I have to keep an eye out for abnormal behavior on her part, much more energy, restless sleeping, kind of like she is hyper. They will then decrease the dose because then she will be getting too much. I always hate when they change the dose because then you have to go back and get rechecked, which means another poke. Helen just fell out of bed, she hasn't done that in ages, I'm thinking we are going to have to call the doctor tomorrow, I want to check with her teacher and see if they see a change in her.

Friday, March 16, 2007

Back in December I volunteered to be the parent organizer for the annual Spring jazz festival at my daughter's high school. In addition, I was responsible for the fundraising raffle. The other parent committee leaders and volunteers were positively incredible and inspiring. So, the general organization work was not a huge time drain. But the raffle, and all of the prize solicitation and ticket sales that it entailed, certainly was.

The few weeks preceding the jazz fest were particularly hectic and activity filled. I looked forward to the weekend of the performances and then being able to focus much, much more of my time and effort on this clothing business and the blog. My intention - and mantra - was to transition "from jazz fest to blog fest!"

As Susie wrote, our mom's hospitalization turned that plan on its head. My plan went awry! I've been with her pretty steadily, sleeping in her room overnight (in the green Naugahyde recliner that I've claimed as my domain and office; I'm there now!), talking with the doctors and nurses (who are all wonderful), manning the phone, generally keeping an eye on her. She's stable now and my mind has calmed enough for me to turn more focus back to this.

I haven't been away from this initiative completely, though. It always occupies a part of my conscious, and subconscious, mind. And, there's been a good bit of forward movement as I continue to receive feedback from you and work to produce the first collection.

Before I end this post, I want to tempt fate by telling you my expectation for this blog. Kathleen Fasanella, the author of the invaluable book The Entrepreneur's Guide to Sewn Product Manufacturing and the equally invaluable blog fashion-incubator.com (F-I) mentioned this humble and budding down syndrome clothes blog on F-I. (Thanks Kathleen!) She pointed out, so accurately and perceptively, that Susie and I are still finding our voice in this blog. That is so. Here's our hope (yep, I really mean "plan".)

Susie will continue to write from a personal perspective. She will write about her life and motherhood, including issues she's faced with Helen, her daughter who has Down syndrome and who is the inspiration for this business. She's already mentioned hypothyroidism; there's so much more that leaps to mind - the challenges associated with her recently-diagnosed Celiac's disease, the joy and thrill of her learning to read this school year, of course clothing fit issues.

I will write most often about the clothes and the business. That's pretty fertile ground. I want to share what I've learned to date and ask for more thoughts and feedback. I want to talk about the first pieces of clothes that we'll produce for you, what their design features will be, when and how they'll be available, how the offering will expand over time - always based on your needs and your responses. I'll tell you about my dreams for this company and the good I hope to do as it grows. Just a couple of my plans are to contribute a percentage of profits to local and national support groups, and to employ (once we get big enough to have employees!) parents of children with Down syndrome as in-home customer service representatives. In many, many postings I expect to ask for feedback and opinions from you. The bottom line is that this company has been formed to produce and provide clothes that fit people with Down syndrome. Your voice - you people with Down syndrome and parents and family - is most important to me. You will guide me. I may be distracted occasionally by a jazz fest or the beeps and hums of medical equipment, but your voice will always be music to my ears. Know that I will recognize and respond to it through the din from the other aspects of my life.

Wednesday, March 14, 2007

It has been very hectic with Sherry and I lately, we are both exhausted. She is very eager to write another message to everyone and will do so in the next couple of days. She is staying with our mom in the hospital, she has been in since yesterday. We noticed she wasn't sounding good over the phone, she was very short of breath. Our mom is very stubborn and refused to go to the ER over the week-end, she insisted on waiting for her doctor's appointment on Tuesday. On Tuesday she was very confused and weak from not eating in days, she scared us all. The doctor admitted her into the hospital to run tests and get her healthy again. There are a few things going on with her, she has pneumonia in one lung. Her oxygen level is very low so they have her hooked up to oxygen. She is in the ICU right now but Sherry seems to think she will be out of there within the next couple of days, she is doing much better than yesterday. I would love to help my sister out and stay with my mom in shifts, but unfortunately I am not in the position to do so. I don't have anyone that can stay with my kids for a long period of time, let alone stay the night. My mom is an hour away from me. I am doing my best to help out in other ways and hope that is enough for now. Sherry is taking on the biggest job right now, making sure she has someone with her most of the time. I'm sure not only is this scary for us, but our mom too. The doctor expects her to be in the hospital for awhile and from there she will go into a rehab facility. I do know they have a facility right across the street from the hospital she is in, I know that because I was looking into one for Peter when they thought he would need one. I plan on going to see her this week-end, Sherry and I are trying to coordinate a time when I can drop my kids off at her house. I haven't been back to that hospital since Peter passed away, that is the same place where he was receiving treatments, and was hospitalized himself.

Wish me luck with my St. Patrick's Day dinner, I'm expecting between 25-30 people!! (my mom is the only one who said she couldn't make it) There is still time for last minute "Sorry, we can't make it." I will let you know how the party goes!

Tuesday, March 13, 2007

The week-end flew by, we were quite busy. Ted and Robbie had a sleep over at Aunt Sherry's house with Evan, the girls, Noah and I had errands to run. I met with the man who is making the monument for Peter's grave, I think it will be beautiful. He is going to carve our picture into the stone instead of having a picture on a porcelain background. It should be completely done and installed by July at the latest, plenty of time before the one year anniversary.

I am having family and friends coming over on Saturday, I sent out invitations with RSVP regrets only and I haven't heard from anybody. They have until Wednesday to let me know, I probably just jinxed myself and will get a flood of calls tomorrow. I have a very busy week, I'm hoping I'll have enough time to get everything done. Helen has an appointment at Children's on Wednesday morning, it's just a check up with the Endocrinologist. We are switching from a doctor in Illinois to one at Children's, I hope it works out. Her medication needed to be adjusted and it turned into such a headache with the old doctor, her pediatrician finally took care of it. Helen has hypothyroidism, she was diagnosed a year ago, this is her first dose change. At first it was terrible getting her to take her medicine, now she's a big girl, hardly any issues.

Wednesday, March 7, 2007

I dreamt of Peter last night, what a nice dream. He was comforting me, I got lots of hugs and kisses on the forehead, it seemed so real, it felt so real. His illness crept into the dream, and then his death. I woke up with mixed feelings, happy to have had the comfort, sad to have experienced the loss again. I have realized it wasn't the writing that made me sad but the way I have been thinking lately. I think of where we were a year ago at this time and if the cancer was starting to attack, I think so. He started complaining of headaches more frequently, he hardly ever had a headache, that was me. I remember at Robbie's birthday party I asked him to do the shopping for a dip I make. I needed him to get sour cream, I also needed three other things that were very simple to remember, he forgot the sour cream, that was not like him. He usually would have called me from the store, he had forgotten his cell phone. We are going to celebrate Robbie's sixth birthday on St. Patrick's Day, a week early. Peter and I had decided last year to have it early so we could have everybody over for corned beef and cabbage. I've been told I make a pretty good Irish Soda Bread, of course that compliment came from my mom so I'm not sure if it's that great, you know how mom's can be.

Helen got sent to the principle's office tonight at religion class, she wouldn't stop laughing. I told them she was the same way at church on Saturday, they laughed, I wish they were the ones in the family room with me. What can you do? She has one heck of a sense of humor, like her dad, I'm the serious one. She's good at teasing also, especially Grandma! When Grandma gets up from her chair, Helen rushes over and sits in it. When Grandma comes back, Helen looks up at her with a huge smile and starts laughing. The boys had Greek school, they are working on poems for the Greek school program at church.

I'm having a life insurance physical done in the morning so I should go to bed and get a good nights sleep. I haven't had one of those for a very long time.

One of the most appealing aspects of creating a business to specifically serve people with Down syndrome is witnessing and, to an extent, experiencing the warmth, kindness, and love that is the community of people with Down syndrome and their family and friends. I feel humbled and grateful every time I read an email or receive a phone call from someone responding to my requests for insights and measurements. It has made me determined to go forward with this initiative and to expand the product offering beyond just children’s wear. I am beginning this business on a small scale but will expand as quickly as your responses will allow me. Know that in the not-too-distant future you will be able to buy clothes that fit your daughter, son, brother, sister, grandchild – that person you love deeply and want to be able to wear clothes that look “like what the other kids wear” or clothes that make them feel good, or clothes that don’t make him or her look like they’re “playing dress-up” because the sleeves or the pant legs are too long. That’s my vow to you.

Back to the sense of community that I’ve found already in those of you have taken time to encourage me and to provide your thoughts. Since I’m adopting you as my community (as many of you as will accept me, anyway) I thought you might like to know a little bit about me. So, here is a start.

The best and easiest start in explaining who I am is to talk about my three greatest accomplishments. They are my children - Alex, Blythe and Evan. My children are good, smart, and funny. Since I love to laugh I am happy and relieved that they each have a well developed sense of humor and very quick wit. Whew!

Alex – Alexander, really - my older son is 17 years old. I remember the day that I brought him home fresh from the hospital as clearly as if it were last week. I held him, all swaddled in receiving blankets despite the early August weather, in my arms and stepped gingerly into my house as a new mother. I felt like a different woman than the one who had left that home in the late night hours nearly a week earlier. I had been an overripe and anxious wreck – nearly 3 weeks past my due date but 19 hours into labor by then and ready to have the whole thing over. I returned lighter on my feet yet heavy with the responsibility of doing right by this dear, sweet, totally dependent child. The dog, who had evidently missed me, flew through a couple of rooms and leapt onto me. I burst into tears…fear and hormones. For me, that observation from the movie Parenthood rings true – that parents are so cautious, so apprehensive with the first child but by the time the third one arrives, you “let him juggle kitchen knives.” Yep…just about!

Despite my obsessive worry, Alex has turned out well. He’s a good student (in most classes), president of his junior class, and has a part time job. He’s very active in the business-focused club DECA and takes marketing classes in high school. I revel in that because for years he teased me about being a corporate marketeer and taunted me with endless “Dilbert” cartoons. Alex loves history, politics and world events. He’s a very good writer. He plans to study political science in college. He plans to be U.S. President some day. He and his sister are very staunch in support of their respective, opposing political parties. Alex asked me once “If Blythe and I were running for President against each other, who would you vote for?” I was divinely delivered a response pretty quickly. I told him “I’m from Chicago. I’d vote for both of you – often.”

My daughter, Blythe, is 16 years old – 16 months younger than Alex. She’s a good student too, never having gotten a grade lower than “A” since 3rd grade, when grading shifted from general categories (high, medium, low) to the A, B, C scheme. She has a full schedule of honors classes and a calendar full of varied extracurricular activities. She, too, is class president – of her sophomore class, she’s a student council vice-president, captain of the academic team, a member of the tennis team, an actress in the school plays – and a few more things; I tend to lose track. She plans for an Ivy League education, a law degree, and a public service career. When she was 5 years old she asked me “Mommy, what does it take to be President of the United States?” Well, coincidentally, I had just finished the biography “First in His Class” about Bill Clinton. So, I told her – in apparently too much detail – about Clinton’s decision, at the same age, to become President and about his path to the White House. When I was done she was silent for a while. Then she said “Maybe I’ll just be First Lady.” Soon thereafter, however, she returned to her original plan. And I was reminded that no matter how precocious she was, she was after all just a young child.

My youngest, Evan, is 9 years old. He is a third grader. He’s very good at math, and has recently become something of a presidential scholar. My older brother has written a handful of presidential biographies for children ages 4 to 9; Evan has read them all (often) and has expanded his reading to include such biographies by non-family authors. He knows all the presidents, in order (as does Alex), and he often stumps me on presidential facts. That’s saying something because I like political history myself and thought myself pretty astute until recently. Evan has begun to see himself as capable of a political career, like his brother and sister. I can see him doing that – or a hundred other things. His interests are varied. He’s intellectually curious yet he loves the outdoors. He enjoys conducting “experiments”. We have a small pumpkin gourd in the freezer – 5 months old now and counting – that he pulls out, thaws, observes, and returns to its space every now and then. Recently I’ve begun to wonder if the odd smell emanating from the fridge/freezer is that pumpkin. It may be time to end the experiment.

It’s probably time to end this entry as well. Thanks for indulging a proud mother.

Tuesday, March 6, 2007

I think I have finally figured this blogging thing out! I have never done this before, and I think I was starting at the wrong point every time. Instead of adding to my blog I was creating a new one each time, forgive me. I had a little free time this morning so I thought I would look around and see if I could figure it out, and I think I have. I am off now to clean the basement which is actually the kids playroom, it is a disaster, there are toys everywhere!Thanks for being patient with me, hopefully I will make things easier on both myself and everyone else reading these blogs.Until next time-SuePosted by Sue at 10:41 AM0 commentsMonday, March 5, 2007The Week-endI have been quite sad since I last wrote, it was the first time I had written into words about Peter. I started a journal back when he was first diagnosed so the kids could have a better understanding of the journey when they got older. The last time I wrote in it was when we were in the hospital waiting for him to die, I haven't picked it up since. I am doing better today, I got some housework done. If I let one day go by without picking up, this house looks like a tornado hit, so I had my work cut out for me. I also got caught up with the laundry, I can go every other day doing wash, if I go three days I am swamped with dirty clothes. I think it's time for some laughter so I'm going to share a story about Helen. I recently had her IEP meeting with her teacher and therapists. We had just gotten a lot of snow that day so the playground hadn't gotten cleared yet. Helen loves to go down the slide, she could do it for hours! She was wearing a brand new outfit she had gotten for Christmas, it fit nicely around her stomach but the length, once again, was an issue. It wasn't as long as some of the other pants she has so I thought she looked quite spiffy! I didn't pack her snow pants because I thought it was too cold for them to go outside, it was in the twenties. Come to find out they go outside unless it's below ten degrees, my other kids don't go outside if it's below thirty. Once Helen got outside there was no stopping her, the teachers tried, she insisted on going down the slide. It didn't matter to her that there was a ton of snow on it, she went down it anyway and cleared the snow off with her butt. They told me she did this for a good ten minutes before they finally were able to get her inside. Once she was in the school and had taken her boots off they noticed her pants had grown, about three sizes!! They were so wet and weighed down that the legs were trailing behind her for a good two feet!!! I have since packed her snow pants every single day, no matter what the weather.Robbie's week-end was packed with birthday parties, on Saturday he was at Chuck E. Cheese and on Sunday he was bowling. Sunday night he was a bear, too much stimulation for the big guy, but you're only kid once and he had a blast. We all went to Mass on Saturday, Helen had the giggles, thank goodness we were in the family room. Although I must say even in there I get looks from people, like I can't control my kids. We are in the family room, it's called that for a reason! If they knew my story maybe they would be more forgiving, shame on them, at least I take my kids to church. There is one couple especially, they have one child who looks to be about two. Well, of course he is better behaved he has two parents watching over him, I would like to see either one of them take on six kids by themselves! It's not so easy!! Helen is learning the Lord's Prayer in sign language so it's exciting to see her recognize the prayer when we are in church.I have received more help from people so I really need to write thank you notes and it's getting late.Until next time-SuePosted by Sue at 8:52 PM0 commentsSubscribe to: Posts (Atom)Blog Archive▼ 2007 (2)▼ March (2)I think I have finally figured this blogging thing...The Week-endAbout MeSue View my complete profile

We hit a rough patch in our marriage, my husband was having a rough time at work. He was in Sales, so his paycheck was based on commission. We were having a tough time paying the bills so he decided to rent out our house and move us in with his dad in Wisconsin until we got back on our feet. I didn't like this idea, his dad lives in a one bedroom apartment, I couldn't imagine all of us crammed into such a small space. I took the kids and went and stayed with my brother and his wife. Peter and I eventually worked things out, not without a lot of arguments, he ended up staying with us at my brother's. We ended up at his dad's for just a short while, then we moved next door to him in a three bedroom apartment. Helen ended up in the hospital with pneumonia, her oxygen level was less than 50%. We were there for about ten days, she came home on oxygen and stayed on that for about a week. During this time I found out I was pregnant with baby number six! We didn't tell anyone until Grace's first birthday party, and only then because I was starting to show, if I could have gone longer I would have. I don't think people realize how hurtful they can be with their comments, if you have more than two kids these days, you're considered crazy. Everything was moving right along, Peter got a job getting paid every two weeks so there was a steady income finally. Helen was doing good in school, she still wasn't talking very much, they were really working with her on that and we did start to see improvement. She was getting quite chubby, I started noticing her clothes no longer fitting the way they once had, too tight. My sister, Sherry, had given me a ton of hand me downs so I started going through them. Helen was five and already wearing 7/8, but the length of the pants and the arms were way too long. I would roll them up and throughout the day they would work their way back down. It was very frustrating! Helen had cute clothes, she just looked like she was swimming in them. May 14, 2006 is a date I will never forget, Mother's Day. Peter went to the Emergency Room, he felt like he was off balance and just not himself. They took a CAT Scan of his brain, he had a tumor. We went to the Mayo Clinic in Minnesota the following week where they did an MRI. The doctors there said it looked to be a glioma but wouldn't know for sure until they did a biopsy. They explained the surgery, even showed us pictures of the halo he would have to wear, this freaked him out. We left there that same day, he wasn't ready. When we got home we called MD Andersen in Houston and set up an appointment there the following week. We flew in on a Sunday, his appointment was Monday morning. We did some sightseeing and then had a nice lunch. We went back to the hotel to relax and looked through some brochures contemplating what to do next, we fell asleep. When we woke up we headed back out for a walk and fell upon this little restaurant. Peter had prime rib, I had lobster, bib and all! It was a very nice day, never once did we talk about the real reason we were there. I believe in my heart God gave me that day as a gift because after that day everything went down hill. The doctors at MD Andersen told us the same thing as the Mayo Clinic but something in the face of the doctor woke Peter up and he realized how important it was to get that biopsy. We left Houston that same afternoon, setting up the appointment at Mayo on the way to the airport. We were back at the Mayo Clinic Wednesday,June 14th, his biopsy was scheduled for the next morning, June 15th, my brother's birthday. The surgery went well, Peter was glad it was over. We had a nice visit, then Maria(his sister) and I headed back to the hotel for some much needed sleep. I found out the next morning when I called the hospital to see how Peter was doing that he had two seizures during the night, back to back. They left the decision up to him whether he wanted to go home or not, of course he wanted to go home to his babies. It took two days for the results, it wasn't good, Astrocytoma Grade 4, in other words, brain cancer. He started radiation and chemotherapy locally, his doctors at Mayo were being informed of his progress. We were at the half way point of his treatment when he collapsed at Katie's fourth birthday party, he would never walk again. He ended up in the hospital for a week, during that time he couldn't do his radiation treatment because he was in such pain when he laid down that he couldn't stay still. The day he got out we went and saw his oncologist, he saw a significant decline in Peter's condition. Our plan was to see if the steroids would take down the swelling in his brain and if they didn't we would go back to the hospital so they could give him a drug that would do it on the spot. Two days later Peter had back to back seizures on our front porch, we went to the emergency room. They gave him the medicine for the swelling, nothing happened, I knew this wasn't good. They did another MRI. When the doctor came to see me, I knew it wasn't good. The MRI showed the tumor had grown, it was now on both sides of his brain, taking it over. There was nothing they could for him, they gave him just a couple of days to live. Peter always told me I had to let him know everything, "If they tell you I'm going to die tomorrow, then tell me I'm going to die tomorrow," he made me promise. I never thought I would ever have to tell him he was going to die, so of course I made the promise. He was pretty drugged up, but I told him, so he knew. At this point the tumor was taking over, he wasn't very alert, but he knew you were there. He was on morphine for the pain, and he slept a lot, in fact he slept through our wedding. We had to get married Orthodox so he could have an Orthodox ceremony and be buried by his mother in the Orthodox cemetery. August 3, 2006, my Orthodox wedding anniversary, my nephew's birthday. My birthday was August 5th, the day the doctors expected Peter to live until, he waited until August 8, 2006, for me. His death certificate reads Glioblastoma as cause of death, they believe the biopsy pulled the lessor of the two evils, but in fact he had the worst possible brain cancer you can have, and very aggressive at that. Everything has happened so quickly since then, we moved into a nice house in a nice neighborhood. The kids have a great backyard to play in with a new swing set, Helen loves the slide. We lost one of our dogs ten days after Peter died, Robbie wanted to know where he was buried so we could go visit him like we do daddy. Helen was just recently diagnosed with Celiac Disease so we are adjusting her diet accordingly, so far so good. Grace and Helen are wearing big girl panties, HOORAY!!! We have had a few set backs with Helen's school, they want to keep her in kindergarten for another year, I agree. It will benefit Helen down the road when it comes to inclusion. She goes to religion class and just loves it, everyday she asks me if she's going. Because of the Celiac Disease Helen has lost weight so she is able to fit into a smaller size, but the arm and leg length are still an issue. Everyone is holding up, we all have our moments but we are there for each other. I get my strength from my kids, if they weren't here I don't know where I would be, lonely. Don't get me wrong, I do get lonely, at bedtime when it was mine and Peter's time to talk, or watch TV. During the day I don't have time for those feelings, how could I? That brings us to today, and it was a good day.Until next time-Take Care,SuePosted by Sue at 11:05 PM0 commentsSubscribe to: Posts (Atom)Blog Archive▼ 2007 (1)▼ February (1)My Story continuesAbout MeSue View my complete profile

Hi everyone, my name is Sue, I'm Helen's mom and Sherry's sister(she calls me Susie). Sherry asked me to blog, I've never done it before but I'm willing to help her in any way possible in order to get this clothing line started. I was raised by my mom, my dad was killed in a car accident when I was four years old. I met the love of my life on June 9, 1988, nine years later we were married(he was Greek, I am not, that should explain everything!). We were pregnant two months after we were married, we both wanted a lot of kids and we weren't getting any younger. Theodore arrived three weeks before our one year anniversary, we were thrilled. When Teddy was eight months old I took a home pregnancy test, it came out positive. The same day I took the test, I miscarried, it was May 13, 1999, my very first Mother's Day. The doctor told us we should wait at least thirty days to try again, we were very careful, or so we thought, yes, I was pregnant. Our second child was to be a millennium baby, due February 15, 2000. During that pregnancy we moved away from family, about two hours, to Michigan. Peter, my husband, had gotten a job transfer, he was thrilled, I was not. We settled in and waited for the baby to come, we had no idea what was lying ahead. I went into labor very early on Feb. 5th, but didn't have the baby until the very next morning, Feb. 6th. My very first look at Helen and I knew she was Down Syndrome, my husband had no idea what the features were. We didn't know ahead of time what we were facing, there was a lot of information thrown at us right away, it was very overwhelming. There was some confusion within the pediatrician's office so the doctor didn't come to look at Helen until the next day, the nurses couldn't say anything to us about Helen. It was as if we were flying solo, and if it had not been for the fact that I had encountered Down Syndrome before Helen, we wouldn't have been as prepared as we were when the diagnoses was official. I was very happy I had a daughter and yet very sad, I was mourning the life I had imagined for her. Instead of a happy-go-lucky lifestyle we would be challenged everyday, and jumping hurdle after hurdle. My husband had a hard time, not so much accepting her because he loved her no matter what, I think he too was mourning. Everyone knows, mourning is an individual thing, everyone does it differently. We moved back to Illinois when Helen was a month old in order to have the support we needed in raising her. We got her started in early intervention and soon the therapies started, OT, Speech, and Developmental. Our first year with Helen was consumed with doctors appointments, in my opinion, the first year is the hardest. Helen had pulmonary hypertension, and three holes in her heart, PDA, PFO, and VSD. The day before she was 10 months old she had open heart surgery. Everything went well, they were able to patch up all the holes. I can't say enough about Children's Hospital in Chicago, and her cardiologist. Helen really started to grow after her heart was fixed, she was a little peanut before then. Not even a month after we came home from the hospital I fell and broke my leg, a spiral fracture. I was seven months pregnant with baby number three. Robert was born on March 24, 2001, he and Helen were partners in crime. It was such a joy to see Helen interact with Robbie, they were playmates. In July of 2002 and December 2003 I had two more daughters, Katherine and Grace. During that time Helen continued with her therapies, started preschool and turned into quite a dickens! When she was three we found ourselves back at Children's for an adnoidectomy and tonsillectomy. She seemed to always be sick from September through April, and always on an antibiotic. The surgery went well, but because Helen wasn't talking yet it was hard for her to tell us if she was in pain. I kept trying to get her to take fluids so we could go home, but she wanted no part of that. She knew it would hurt when she swallowed so she wasn't going to swallow if she could help it. We ended up going home around 12:30am with a lot of pain medication. It took her a good eight weeks to recover from that surgery.I am going to stop here for now, there is still so much to cover.Until next time--Take Care,SuePosted by Sue at 9:51 PM0 commentsSubscribe to: Posts (Atom)Blog Archive▼ 2007 (1)▼ February (1)My Story

I'm developing a line of clothes specifically for people with Down syndrome. Let's talk about your child or other loved-one, your ideas about their clothing needs such as fit and features, Down syndrome, and clothes in general.......Sherry.

It'll Fit'll...for very special people.

It Will Fit Well

The Team!

L to R: Susie, Helen, Sherry

Purple Text

Some postings have purple text. That's where I ask directly for feedback and opinions from you. Please share your thoughts; they are invaluable. Thanks!

The link below is to the First Posting. It explains what I'm trying to do and why.